About Me

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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Monday, May 23, 2011

honestly sugar coating...

Today I got to go out painting with the gals and had a good time. I have been in sort of a funk these past few days, but today cheered me up!

May is cystic fibrosis awareness month, so I decided to post random CF information on my face book page in hopes to increase awareness. I even thought that if I was honest on how I feel everyday (for the month) that maybe my family and friends who did not quite understand might understand a little better. But that task was a difficult one. I don’t usually like to post things about my health (specifically relating to me that is) because I’m usually not feeling energetic , often times my sinus’s are really causing me problems and well, most of the week my muscles hurt. Whenever I’m honest, it feels almost like I’m complaining…
So my dilemma is should I be honest or sugar coated?
Being honest ensures that there will not ever be a doubt about my health or how I feel. There will be no chance of denial from my friends or family. No chance for them to make comments about my CF being different from regular CF and no chance at any them being able to say things like, “I didn’t know she was sick” or “I had no idea she had that problem.”
Sugar coating allows me to be able to appear “normal” or “healthy” at times when I’m not. Since I have an invisible disease people can’t always tell when I feel less than 100%. I would probably still not get the support in my endeavors to cure CF or mitochondrial disease that I would like and I doubt any of them would rank it as a top 5 priority in life because after all, Chrissy doesn’t suffer too bad.
So I am thinking maybe I can mix the two?
Be honest but not blunt, be optimistic but not delusional, and be upfront be not completely open. I am usually pretty open about my health when it comes to my husband or the cysters and fibros I have met on line but for some reason I’m not able to be that open with family and friends.

So for all of my friends and family (and other people who read this blog)…
If you don’t want to really know how I feel… don’t ask. I don’t like feeling like I’m complaining, I like to be positive. But some days I just can’t be. I can’t smile as often as I would like to, I can’t do the things I used too and I’m too tired to always put up a facade. We’ll use a code; ask me how the weather is…

For those of you who do want to know I will do my best to paint an accurate picture when you ask (although it will not be a vivid picture, lol, just accurate).